On the heels of the publication of the Care Considerations, we wanted to celebrate someone who has devoted her life to caring for our sons, and creating awareness about the importance of physical therapy in treating Duchenne. Helen Posselt, who travels to PPMD's Annual Connect Conference every year from Australia, is one of those people who has changed the face of Duchenne because of her passion and commitment to physical therapy. Meet this remarkable woman.
Advocating Locally As we gear up for the Annual Advocacy Conference, many of our families have already met with their Member of Congress by visiting them locally. PPMD Board Member and parent, Christine Piacentino and her son Jonathan (see picture above), along with Alison Willis of Two Smiles One Hope and her twin boys Nolan and Jack, met with U.S. Congressman Dan Maffei of New York. These kinds of meetings are so crucial to our advocacy program. Make sure you get involved and help us advocate for your son.
New IEP App for iPhones The Parent Educational Advocacy Training Center (PEATC) is pleased to announce the development of an IEP Checklist iPhone application. The IEP app is offered free of charge. Click here for more details.
Stay Warm & Raise Awareness If you haven't gotten the new PPMD hooded sweatshirt, today's the day to treat you and your family to something warm! Visit the PPMD Store for this and other great looking End Duchenne items.
Stay Plugged In
Facebook Twitter RSS YouTube Flickr
Lisinopril vs. Losartan Five centers are collaborating in a double-blind randomized study funded by the MDA to determine if the ACE inhibitor lisinopril is more effective than losartan in treating heart function in Duchenne. Investigators will also determine if the participants who receive losartan show any improvements in muscle strength. The study will be recruiting 150 boys and men of all ages with a positive diagnosis of Duchenne. Participants must show less than 5% normal levels of dystrophin in their muscles and also have cardiac ejection fractions below 50%. Participating centers include Nationwide Children’s Hospital in Columbus, Boston Children’s, St. Louis Children’s, University of Minnesota, and UC Davis. The study is recruiting now. (Scroll down to Cardiomyopathy in Patients with Duchenne) Important Survey for Parents Attention parents of children with Duchenne and Becker muscular dystrophy (D/BMD), congenital muscular dystrophy (CMD), and spinal muscular atrophy (SMA): The National Task Force for the Early Identification of Childhood Neuromuscular Disorders is conducting a survey. We want to learn more about parents’ first concerns about their child and how they described those concerns to their healthcare providers. The Task Force understands that there may be a long time between when a parent first has worries about an infant or child and when the diagnosis happens. This survey is one part of an outreach program designed to reduce the time it takes for families to get an accurate diagnosis of neuromuscular disorders. Please click here to learn more about this important survey.
Progress Report: The Effects of Sildenafil on mdx Skeletal Muscle Nick Whitehead, Ph.D., provides preliminary data that shows promising effects of Sildenafil treatment on mdx diaphragm fibrosis. Dr. Whitehead, a PPMD Fellowship recipient and part of Stan Froehner’s lab, is focusing on understanding the mechanism and functional benefits of Sildenafil’s reduced fibrosis. Read Dr. Whitehead's progress report.
Stem Cell Tourism TREAT-NMD's website helps distinguish between the hype of stem cell research and the hope that this science may bring to diseases including Duchenne.
Countdown to Annual Advocacy Conference PPMD’s Annual Advocacy Conference kicks off in just over two weeks, February 21-23 in Washington, D.C. If you are planning on attending, we are excited about having you with us on Capitol Hill. This is an important year for us to be in Washington, in front of Members of Congress so that they see the faces of the families affected by Duchenne. If you are not able to attend, be on the lookout for important Action Alert emails the week of the Conference, instructing you on whom in Congress you need to contact to help us continue to get the support we so desperately need from the federal government. If you have questions about the Conference or about advocating from home, please do not hesitate to contact us.
PPMD Launches CO/WY FACES On January 31, with the help of coordinators Ivy Scherbarth and Angela Knight, PPMD launched our newest Duchenne FACES group in Colorado/Wyoming. Duchenne FACES (Families Advocating, Connecting, Educating, and Supporting) is the official parent-led outreach initiative of PPMD focusing on family mentoring, fundraising, and grassroot events. To learn more about FACES and to get involved in your area, visit the FACES page of our website.
January Victories Start 2010 With a Bang! Back to back races on opposite sides of the country, started the 2010 Run For Our Sons season with great promise. 153 runners and their families descended upon a chilly (and icy!) Magic Kingdom for the WALT DISNEY WORLD Marathon and Half Marathon. As veteran runner Kevin Smith put it, the fire in our hearts kept us warm as our team completed 13.1 miles, 26.2 miles, or for 14 particularly “Goofy” individuals, 39.3 miles! We raised $304,000 and celebrated our sons and our victories at a phenomenal Victory Party hosted by Mickey and Minnie at Epcot.
For our warmer adventure in Arizona, 38 runners donned our green singlet for the 2010 PF Chang’s Rock ‘n’ Roll Arizona Marathon & Half Marathon. One of our newer events, this year’s team continued to push our fundraising total, raising more than $26,000! A special thanks to Arizona mom, Jill Castle, for helping to bring the team together and being such a wonderful host.
There is plenty more coming up for you to participate in this year. Make sure you check out the RFOS calendar for 2010.
Celebrate Spring in NYC There is still time for you to be part of an incredible team of runners at one of Run For Ours Sons' most exciting new events: The New York City Half Marathon on March 21, 2010. This empowering 13.1 mile event will take runners from Central Park through the heart of the city, into Times Square, and finish in the Battery Park area of lower Manhattan. Visit the RFOS website to register. Join our team and wear our green!
IMPORTANT: Edit to Care Considerations An important change has been made to Part 2 of the recently published Care Considerations. Please download this version; it should replace any previous version. The change takes place on page 185 where indicated, with the correction on page 189.
Moms, Daughters, & Duchenne When we talk about Duchenne, we tend to focus on our sons. But there is a journey that women go on as mothers, daughters, sisters – and as carriers. In her latest blog, PPMD President Pat Furlong shares her personal experiences and talks about how Duchenne affects women, not just emotionally but physically.
PPMD's 2010 Annual Connect Conference Details are quickly coming together for PPMD’s Annual Connect Conference, June 24-27, 2010 in Denver, Colorado at the City Center Denver Marriott. Please be on the lookout for registration information and details about hotel reservations, coming in early March. If you need any information in the interim though, do not hesitate to contact PPMD. This year we have some exciting changes to the Connect Conference that will really take your experience to the next level. Visit our website for more information and we hope to see you in Denver. SAVE THE DATE A busy 2010 is upon us. Keep your calendar up-to-date with these exciting PPMD/RFOS events:
Did you miss us last month? For an archive of previous newsletters, click here.
Our Mission: To improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, education, advocacy and compassion.
